IM SO CONFUSED!

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daize
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 12/22/2007 6:22 AM (GMT -7)   
         HAPPY HOLIDAYS!
    ITS BEEN 3 MONTHS SINCE I HAD A COLONOSCOPY, AFTER THE PROCEDURE THE DR TOLD ME HE THOUGHT I HAD CROHNS. ON MY FOLLOW UP VISIT HE SAID HE DIDNT THINK IT WAS. BIOPSY RESULTS WERE TUBULAR ANDENOMA AND HYPERPLASTIC POLYPS. HE ALSO NOTED SEGMENTAL INFLAMATION OF DESENDING COLON. WHEN I ASKED about INFLAMATION AND WHAT COULD CAUSE IT HE WAS VERY SHORT WITH ME AND TOLD ME "BELIEVE ME YOU DONT WANT TO HAVE CROHNS, I HAVE PATIENTS THAT SAID THEY WOULD RATHER HAVE CANCER THAN CROHNS". I TOLD HIM I NEVER SAID I WANTED TO HAVE CROHNS AND WAS OUT THE DOOR. WHAT AN IDIOT. WELL ANYWAY I WENT BACK TO MY PCP. (OH HERES A LIST OF RECENT SYMPTOMS) LOWER RIGHT ABDOMINAL PAIN, ALTERNATING BETWEEN FREQUENT BOWL MOVEMENTS AND CONSTIPATION(NO DIARREAHIA,SPELLING?) VERY STRANGE NOISES COMING FROM MY GUT, JOINT PAIN, FATIGUE AND NAUSEA. NEXT IM OFF TO SEE A GI.  AFTER 1ST VISIT THERE SHE SAID IT SOUNDS LIKE CROHNS. IN BETWEEN APPOINTMENTS ( I LIVE IN A RURAL AREA SO IT TAKES UP TO A MONTH OR MORE TO GET AN APPT.) I DEVELOPED HEARTBURN AND WAS HAVING A HARD TIME SWALLOWING, SO THEY ORDERED A UPPER ENDOSCOPY. WAITED 3 WEEKS FOR NEXT APPT. AT THAT APPT HE SAID BECAUSE OF RESULTS OF COLONOSCOPY IT DIDNT LOOK LIKE I HAD CROHNS. HE GAVE ME BENTYL, PRILOSEC AND TOLD ME TO TAKE CITRUCEL.  WELL ME BEING THE AGREEABLE PATIENT I AM. I TOOK THE PRESCIPTIONS AND LEFT. WENT HOME AND CALLED MY PCP. SHE DID MORE BLOODWORK AND ORDERED A PELVIC AREA ULTRA SOUND. (IM HAVING THAT NEXT WEEK. I SERIOUSLY DO NOT WANT TO HAVE CROHNS BUT EVERYTHING POINTS TO IT. HERES A LIST OF PAST AILMENTS, ANEMIA,FEVERS AND JOINT PAIN AS A CHILD. CHRONIC CONSTIPATION , LOWER AB PAIN, DELAYED ONSET OF PERIODS, EXTREME PELVIC PAIN WITH PERIODS, BOWL OBSTRUCTION AND RESECTION AT AGE 24,(IM 46 NOW). BOUTS OF LOOSE STOOLS(WAS TOLD IBS) EXTREME AB PAIN EARLY 30S AND 40S (WAS TOLD DIVERTICULITUS, PRESCRIBED CIPRO BOTH TIMES). JOINT PAIN SO SEVERE I COULD BARELY WALK AND COULD NOT HOLD ON TO ANYTHING WITH MY HANDS AT AGE 43 (WAS TESTED FOR RA AND LYME DISEASE . WAS TOLD BLOOD INFLAMATION WAS CONSISTANT WITH LYME BUT TEST CAME BACK NEGATIVE) CYSTS THAT WERE VERY CLOSE TO MY ANUS(WHAT A WIERD WORD) THAT HAD TO BE LANCED. THOUGHT THEY WERE BOILS.  EXTREMLY UNDERWEIGHT AS A TEEN AND INTO EARLY ADULTHOOD. (EVERYONE ELSE IN MY FAMILY TENDS TO BE OVERWEIGHT). OOPS I ALMOST FORGOT THE ORIGINAL REASON I HAD THE COLONOSCOPY DONE WAS BECAUSE OF PASSING BLOODY MUCUS FOR 2 MONTHS(THATS STOP 2 MOS AGO). WHEW! SORRY about RAMBLING ON BUT I KNOW THAT EVERYONE HERE UNDERSTANDS THE FUSTRATION YOU GO THROUGH WHEN YOU HAVE SOMETHING THAT MAY NOT BE EASILY DIAGNOSED. I REALLY DO NOT WANT TO HAVE CROHNS. BUT IM CONFUSED AS TO THE DIFFERENCE IN OPINIONS FROM THE DRS.. THANKS FOR ENDURING THIS. ONCE AGAIN HAPPY HOLIDAYS :-)

rootsmith
Veteran Member


Date Joined Jan 2004
Total Posts : 598
   Posted 12/22/2007 2:53 PM (GMT -7)   
It took me 3 gi doctors and 10 years to get treated and I still don't know for sure, just that I found a gi doctor brave enough to treat me based on my symptoms. Yes, it was very frustrating. The second doctor said he would treat me with a trial of medication after he did a colonoscopy and when that time came, he changed his mind.
10 years, many tests, 3 gi doctors, Pentasa 1000mg 3x day
diovan, simvastatin and now trying good ol' zoloft


randynoguts
Veteran Member


Date Joined Jan 2003
Total Posts : 6050
   Posted 12/22/2007 10:36 PM (GMT -7)   
i feel for ya. fortunately, my diagnosis was a little more straight forward. had a few epsodes of pain and then a fistula popped open. that was it. not really a long lingering thing. of corse there were tests to confirm things etc.. but there was no wondering.
randynoguts 



     http://www.geocities.com/randynogutsweb/


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 12/22/2007 11:05 PM (GMT -7)   
I was in the hospital three times before being sent to see a GI,the other doctors could not find any thing but my old GI took one look at me and said you have crohns and he was right he did all of the test and it came back 100% crohns oh lucky me.
Curley
.........
 


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 1/1/2008 10:33 AM (GMT -7)   
I hope you feel better soon! You have been and are going through a lot!!

I am fairly new to the possibility of having Crohn's--had the scopes last month and the biopsies all came back normal, even though I have inflammation in several areas. To make a long story short--my GI doesn't think I have Crohn's or IBD based on the biopsies but my internist does. It is frustrating to have something go on and not know what it is!

Take care and best of luck with everything! Let us know how things go!

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 1/1/2008 1:41 PM (GMT -7)   
Hi daize
 
This is Kitt, nice to meet you.  I am so sorry you are having so much trouble coming up with a dx.  You have been struggling for a long time.
 
My husband had abdominal pain and went to the clinic, the surgeon saw him and I got a phone call that he was going right to surgery for a hot appendix.  I was home with 4 little kids, so neighbor came over to watch them and I went to the hospital.  Dr. told me surgery should not take long 1/2 hour and then some recovery time.
 
He went to surgery at 4 PM and he returned at 11 PM to ICU............he had Crohns with a perforation.  It was the first case of Crohn's seen in our small community.  He had a resection and he did well.  I saw him in ICU and went out into hall and cried and prayed.  I thought he was dying.
 
That is when I decided to go into nursing. So we never went through what so many do with trying to get the right dx.
I empathize with you and I pray you will get an answer and the right help with your very next visit .
Bless you
Kitt
 

Just a reminder, your caps are on, cap letters are hard to read and are considered as yelling in the forums.  Thanks

 
Co-Moderator Anxiety ~ Panic Disorders
Co-Moderator Crohn's Disease Forum
*~* Not a mental health professional at all *~*
Dx: Anxiety/Panic, Depression, GERD, Osteoarthritis
*Wife of a Crohnie*
******www.healingwell.com/donate***
It is health that is real wealth and not pieces of gold and silver.~Mahatma Gandhi~
 


Momikins
Regular Member


Date Joined Oct 2007
Total Posts : 77
   Posted 1/1/2008 3:58 PM (GMT -7)   
Hi daize,
Your story is heartbreaking! I was told that because the inflammation of Crohn's can come and go with flares and remissions that the Crohn's will not always show up. This may be what is happening to you. I know that I had a CT scan 5 years ago that indicated Crohns and was even put on Asacol. When the Asacol seemed to be making me sick I told my doc and he said "Well, just stop taking it then." He did require a colonoscopy to rule out cancer however. The colonoscopy cam back normal and my GI doc at the time said to take Metamucil and call him if I got in pain again. Five years passed during which time I was diagnosed with another autoimmune disease called: Poly cystic ovarian syndrome. I assumed during those five years that all my pain was from the cysts on my right ovary or that I was working towards needing an appendectomy. Finally, one night the pain was too much and I went to the emergency room. They drew blood and ran another CT scan and told me again that they thought I had Crohn's. I found a GI doctor and he sent me for a small bowel follow through. The doctor running the small bowel follow through tried to tell me that I did not have Crohn's and he was seeing nothing. I made him magnify the colon and the long segment of the ileum that the CT scan had said was affected and right in front of him was the proof. The colon and the illeum were completely covered in ulcers! They were small so he hadn't seen them until he magnified the area! I left thinking he was a idiot and wondering if I should have made him magnify the rest of the small intestine since my GI had wanted to know if the Crohn's was in the rest of the small intestine. It really sounds to me like you have Crohn's, but I'm not a doc of coarse. Just keep seeking second opionions unless your pain and symptoms go away. Aso, keep in mind that people with Crohn's Disease have an autoimmune problem and that leave them wide open to get any number of other autoimmune diseases. You may in fact have a different autoimmune disease that shares some of the same symptoms as Crohn's....or you may have Crohn's plus another disease. Hang in there and you will eventually find out what is causing your trouble.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4100
   Posted 1/1/2008 8:05 PM (GMT -7)   
Hi there,
I agree that you need to persist until you have all of the medical tests available to try to help you with a proper diagnosis. I'm so sick of doctors and their attitude problems! You have a right to advocate for yourself and get proper care, but unfortunatlely it is sometimes easier said than done! Tests to look for Crohn's besides the colonoscopy include a capsule swallow test which can help see your small intestine, CT scan, Blood work..Serology 7 from Prometheus labs, endoscopy, barium swallow.
My GI doc was great about doing the tests and confirming my diagnosis, but is doing a lousy job of managing my medications. I think he made all his money on all my medical tests, and now my chronic flares are just not that interesting! (ok, maybe I'm grouchy and cynical!) I'm about to look for a second medical opinion myself, as I'm tired of feeling lousy! Good luck to you.
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007
currently taking Pentasa 2750 mg- 9pills/day and on and off Prednisone for flares

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